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2.
J Natl Cancer Inst ; 116(5): 642-646, 2024 May 08.
Artículo en Inglés | MEDLINE | ID: mdl-38273668

RESUMEN

Data commons have proven to be an indispensable avenue for advancing pediatric cancer research by serving as unified information technology platforms that, when coupled with data standards, facilitate data sharing. The Pediatric Cancer Data Commons, the flagship project of Data for the Common Good (D4CG), collaborates with disease-based consortia to facilitate development of clinical data standards, harmonization and pooling of clinical data from disparate sources, establishment of governance structure, and sharing of clinical data. In the interest of international collaboration, researchers developed the Hodgkin Lymphoma Data Collaboration and forged a relationship with the Pediatric Cancer Data Commons to establish a data commons for pediatric Hodgkin lymphoma. Herein, we describe the progress made in the formation of Hodgkin Lymphoma Data Collaboration and foundational goals to advance pediatric Hodgkin lymphoma research.


Asunto(s)
Enfermedad de Hodgkin , Enfermedad de Hodgkin/terapia , Humanos , Niño , Difusión de la Información , Investigación Biomédica/organización & administración , Bases de Datos Factuales
4.
Front Public Health ; 11: 1211520, 2023.
Artículo en Inglés | MEDLINE | ID: mdl-37601207

RESUMEN

Objective: Visible minorities are disproportionately affected by musculoskeletal disorders (MSD) and other diseases; yet are largely underrepresented in health research. The purpose of this scoping review was to identify barriers and strategies associated with increasing recruitment of visible minorities in MSD research. Methods: Electronic databases (MEDLINE, EMBASE, CINAHL, and PsycInfo) were searched. Search strategies used terms related to the concepts of 'race/ethnicity', 'participation', 'research' and 'musculoskeletal'. All research designs were included. Two reviewers independently screened titles and abstracts, completed full-text reviews, and extracted data. Papers that did not focus on musculoskeletal research, include racial minorities, or focus on participation in research were excluded. Study characteristics (study location, design and methods; sample characteristics (size, age, sex and race); MSD of interest) as well as barriers and strategies to increasing participation of visible minorities in MSD research were extracted from each article and summarized in a table format. Results: Of the 4,282 articles identified, 28 met inclusion criteria and were included. The majority were conducted in the United States (27 articles). Of the included studies, the groups of visible minorities represented were Black (25 articles), Hispanic (14 articles), Asian (6 articles), Indigenous (3 articles), Middle Eastern (1 article), and Multiracial (1 article). The most commonly cited barriers to research participation were mistrust, logistical barriers (e.g., transportation, inaccessible study location, financial constraints), and lack of awareness or understanding of research. Strategies for increasing diversity were ensuring benefit of participants, recruiting through sites serving the community of interest, and addressing logistical barriers. Conclusion: Understanding the importance of diversity in MSD research, collaborating with communities of visible minorities, and addressing logistical barriers may be effective in reducing barriers to the participation of visible minorities in health research. This review presents strategies to aid researchers in increasing inclusion in MSD-related research.


Asunto(s)
Investigación Biomédica , Minorías Étnicas y Raciales , Grupos Minoritarios , Enfermedades Musculoesqueléticas , Selección de Paciente , Humanos , Bases de Datos Factuales , Etnicidad , Hispánicos o Latinos , Investigación Biomédica/organización & administración
6.
Int J Eat Disord ; 56(5): 864-866, 2023 05.
Artículo en Inglés | MEDLINE | ID: mdl-36891730

RESUMEN

Schleider and colleagues' paper on the application of single-session interventions (SSIs) to eating disorders is timely given the broader focus in mental health on flexible approaches to delivering support at the time the person needs it most. The eating disorder field needs to embrace these innovations including developing a "single-session mindset" with greater attention paid to testing the relevance of SSI for eating disorders. The use of well-powered trials of brief, focused and rapidly scalable interventions is an ideal vehicle for generation and evaluation of new and longer interventions. Our future research agenda needs to carefully consider our target audience, the primary outcome variable of most relevance, and the SSI topic that would be most likely to effect change. Research in prevention might focus on weight concern and evaluation of SSIs that focus on self-compassion or cognitive dissonance related to appearance ideals in the media. Work in early intervention could target denial and disordered eating using SSIs on growth mindset, behavioral activation, and imagery rescripting. Treatment waitlists provide another suitable opportunity, evaluating SSIs that aim to increase hope for change, treatment retention, and kick start early change in therapy, a robust predictor of better treatment outcome.


Asunto(s)
Investigación Biomédica , Terapia Cognitivo-Conductual , Trastornos de Alimentación y de la Ingestión de Alimentos , Humanos , Investigación Biomédica/organización & administración , Terapia Cognitivo-Conductual/métodos , Trastornos de Alimentación y de la Ingestión de Alimentos/psicología , Trastornos de Alimentación y de la Ingestión de Alimentos/terapia , Resultado del Tratamiento
8.
Eur J Orthop Surg Traumatol ; 33(3): 533-540, 2023 Apr.
Artículo en Inglés | MEDLINE | ID: mdl-36752822

RESUMEN

BACKGROUND: Musculoskeletal (MSK) injuries are one of the leading causes of disability worldwide. Despite improvements in trauma-related morbidity and mortality in high-income countries over recent years, outcomes following MSK injuries in low- and middle-income countries, such as South Africa (SA), have not. Despite governmental recognition that this is required, funding and research into this significant health burden are limited within SA. This study aims to identify research priorities within MSK trauma care using a consensus-based approach amongst MSK healthcare practitioners within SA. METHOD: Members from the Orthopaedic Research Collaboration in Africa (ORCA), based in SA, collaborated using a two round modified Delphi technique to form a consensus on research priorities within orthopaedic trauma care. Members involved in the process were orthopaedic healthcare practitioners within SA. RESULTS: Participants from the ORCA network, working within SA, scored research priorities across two Delphi rounds from low to high priority. We have published the overall top 10 research priorities for this Delphi process. Questions were focused on two broad groups-clinical effectiveness in trauma care and general trauma public health care. Both groups were represented by the top two priorities, with the highest ranked question regarding the overall impact of trauma in SA and the second regarding the clinical treatment of open fractures. CONCLUSION: This study has defined research priorities within orthopaedic trauma in South Africa. Our vision is that by establishing consensus on these research priorities, policy and research funding will be directed into these areas. This should ultimately improve musculoskeletal trauma care across South Africa and its significant health and socioeconomic impacts.


Asunto(s)
Sistema Musculoesquelético , Ortopedia , Apoyo a la Investigación como Asunto , Investigación , Humanos , Consenso , Atención a la Salud , Ortopedia/organización & administración , Ortopedia/normas , Investigación/economía , Investigación/organización & administración , Sudáfrica , Investigación Biomédica/economía , Investigación Biomédica/organización & administración , Sistema Musculoesquelético/lesiones , Heridas y Lesiones , Técnica Delphi , Fracturas Abiertas , Apoyo a la Investigación como Asunto/economía , Apoyo a la Investigación como Asunto/organización & administración
9.
Am J Physiol Heart Circ Physiol ; 324(3): H366-H372, 2023 03 01.
Artículo en Inglés | MEDLINE | ID: mdl-36637972

RESUMEN

Cardiovascular disease is the leading cause of morbidity and mortality globally. Transgender and nonbinary (TNB) individuals face unclear but potentially significant cardiovascular health inequities, yet no TNB-specific evidence-based interventions for cardiovascular risk reduction currently exist. To address this gap, we propose a road map to improve the inclusion of TNB individuals in the planning, completion, and mobilization of cardiovascular research. In doing so, the adoption of inclusive practices would optimize cardiovascular health surveillance and care for TNB communities.


Asunto(s)
Investigación Biomédica , Enfermedades Cardiovasculares , Personas Transgénero , Humanos , Investigación Biomédica/organización & administración , Participación del Paciente , Servicios de Salud para las Personas Transgénero
10.
Perspect Biol Med ; 66(1): 58-88, 2023.
Artículo en Inglés | MEDLINE | ID: mdl-38662009

RESUMEN

Biomedical research in the United States has contributed enormously to science and human health and is conducted in several thousand institutions that vary widely in their histories, missions, operations, size, and cultures. Though these institutional differences have important consequences for the research they conduct, the organizational taxonomy of US biomedical research has received scant systematic attention. Consequently, many observers and even participants are surprisingly unaware of important distinguishing attributes of these diverse institutions. This essay provides a high-level taxonomy of the institutional ecosystem of US biomedical research; illustrates key features of the ecosystem through portraits of eight institutions of varying age, size, culture, and missions, each representing a much larger class exhibiting additional diversity; and suggests topics for future research into the research output of institutional types that will be required to develop novel approaches to improving the function of the ecosystem.


Asunto(s)
Investigación Biomédica , Investigación Biomédica/organización & administración , Humanos , Estados Unidos , Diversidad Cultural , Academias e Institutos/organización & administración
15.
Am J Primatol ; 84(6): e23378, 2022 06.
Artículo en Inglés | MEDLINE | ID: mdl-35365857

RESUMEN

The social setting of animal subjects in the research environment has known effects on a variety of dependent measures used in biomedical research. Proper evaluation of the robustness of published research is dependent upon transparent, detailed, and accurate reporting of research methods, including the animals' social housing conditions. However, to date, most research articles utilizing nonhuman primates (NHPs) provide only partial data on this topic, hampering transparency, and reproducibility. Therefore, we call for the inclusion of information pertaining to the social aspects of the animals' housing conditions in publications involving NHPs to improve transparency. We argue that including this information in scientific publications is crucial for the interpretation of research findings in the appropriate context and for understanding unexplained variability in study findings. Finally, the inclusion of this information in publications will additionally familiarize scientists with how other researchers conducting similar studies are housing their animals and will encourage them to consider the implications of various housing conditions on their research outcomes.


Asunto(s)
Investigación Biomédica , Vivienda para Animales , Primates , Animales , Investigación Biomédica/organización & administración , Investigación Biomédica/normas , Reproducibilidad de los Resultados , Proyectos de Investigación
16.
Health Expect ; 25(4): 1619-1632, 2022 08.
Artículo en Inglés | MEDLINE | ID: mdl-35484840

RESUMEN

INTRODUCTION: British Pakistani women have exceptionally high rates of obesity and yet are seldom heard in a research priority setting concerning weight management. The objectives of this study were (i) to ascertain what multisectoral professionals perceive to be the most pressing unmet obesity needs or topic areas that need more research in relation to Pakistani women living in deprived areas of Bradford and (ii) to determine the top 10 obesity health priorities for this group to develop an obesity research agenda. METHODS: A two-step process was adopted using the following: (i) a survey of a wide range of multisectoral professional stakeholders (n = 159) and (ii) a ranking exercise involving Pakistani women living in deprived areas of Bradford (n = 32) to select and prioritize their top 10 obesity health concerns and unmet needs from a list of 31 statements identified in the survey and previous research. Survey data were analysed using inductive content analysis and themes were identified. Themes were translated into statements to be ranked by Pakistani women. The ranking exercise was conducted by telephone either via voice or video call. Data were analysed using a reverse scoring system. RESULTS: Survey responses were grouped into statements reflecting the following three categories: education needs; healthy behaviour barriers and mental well-being. The highest rankings were given by Pakistani women to statements on mental health and the need for education. The top 10 prioritized statements were developed with members of the public into an obesity research agenda that reflected the target population. CONCLUSION: Actively engaging British Pakistani women in setting research priorities provided a unique opportunity to understand the key areas they think are important for future research. The culminating research agenda can be used by researchers to advance the field of obesity research in Pakistani communities, thus producing research outputs that are relevant to and have impact in this population. PATIENT OR PUBLIC CONTRIBUTION: Participants in the ranking exercise collected data. Public contributors were involved in developing the prioritized statements into a research agenda.


Asunto(s)
Prioridades en Salud , Necesidades y Demandas de Servicios de Salud , Investigación sobre Servicios de Salud , Obesidad , Áreas de Pobreza , Determinantes Sociales de la Salud , Investigación Biomédica/métodos , Investigación Biomédica/organización & administración , Femenino , Encuestas de Atención de la Salud , Prioridades en Salud/organización & administración , Investigación sobre Servicios de Salud/métodos , Investigación sobre Servicios de Salud/organización & administración , Humanos , Colaboración Intersectorial , Obesidad/epidemiología , Obesidad/terapia , Pakistán/etnología , Determinantes Sociales de la Salud/estadística & datos numéricos , Participación de los Interesados , Reino Unido/epidemiología
17.
Value Health ; 25(3): 368-373, 2022 03.
Artículo en Inglés | MEDLINE | ID: mdl-35227447

RESUMEN

OBJECTIVES: This study aimed to showcase the potential and key concerns and risks of artificial intelligence (AI) in the health sector, illustrating its application with current examples, and to provide policy guidance for the development, assessment, and adoption of AI technologies to advance policy objectives. METHODS: Nonsystematic scan and analysis of peer-reviewed and gray literature on AI in the health sector, focusing on key insights for policy and governance. RESULTS: The application of AI in the health sector is currently in the early stages. Most applications have not been scaled beyond the research setting. The use in real-world clinical settings is especially nascent, with more evidence in public health, biomedical research, and "back office" administration. Deploying AI in the health sector carries risks and hazards that must be managed proactively by policy makers. For AI to produce positive health and policy outcomes, 5 key areas for policy are proposed, including health data governance, operationalizing AI principles, flexible regulation, skills among health workers and patients, and strategic public investment. CONCLUSIONS: AI is not a panacea, but a tool to address specific problems. Its successful development and adoption require data governance that ensures high-quality data are available and secure; relevant actors can access technical infrastructure and resources; regulatory frameworks promote trustworthy AI products; and health workers and patients have the information and skills to use AI products and services safely, effectively, and efficiently. All of this requires considerable investment and international collaboration.


Asunto(s)
Inteligencia Artificial , Sector de Atención de Salud/organización & administración , Sector de Atención de Salud/estadística & datos numéricos , Política de Salud , Administración de los Servicios de Salud/estadística & datos numéricos , Investigación Biomédica/organización & administración , Vías Clínicas , Atención a la Salud/organización & administración , Eficiencia Organizacional , Sector de Atención de Salud/economía , Sector de Atención de Salud/normas , Equidad en Salud , Humanos , Administración en Salud Pública/normas , Administración en Salud Pública/estadística & datos numéricos , Administración de la Seguridad
20.
PLoS One ; 17(2): e0264221, 2022.
Artículo en Inglés | MEDLINE | ID: mdl-35180276

RESUMEN

BACKGROUND: Most studies examining complementary and alternative medicine (CAM) stakeholder engagement with evidence-based practice have relied on quantitative research methods, which often fail to capture the nuances of this phenomena. Using qualitative methods, this study aimed to explore the experiences of CAM stakeholders regarding the barriers and enablers to the conduct and application of research. METHODS: This research was guided by a qualitative descriptive framework. CAM practitioners and researchers of multiple CAM disciplines from across Australia and New Zealand were invited to share their personal perspectives of the study phenomena. Semi-structured interviews were conducted via Zoom, which were audio-recorded and transcribed verbatim. Rigour strategies were applied to ensure the credibility of results. The transcript was analysed using thematic analysis. RESULTS: CAM stakeholders identified an array of barriers and enablers to the conduct and application of research within their disciplines. The barriers and enablers that emerged were found to be inter-connected with two similar constructs: capacity and culture. Captured within the construct of capacity were five themes-lack of resources, inadequate governance/leadership, lack of competency, bias directed from outside and within CAM, and lack of time for research. Within the construct of culture were two themes-intrinsic perceptions in CAM, and lack of communication within and outside CAM. CONCLUSIONS: Promoting evidence-based practice and engaging with research in CAM continues to face challenges. This study, for the first time, has highlighted the multitude of interlinked barriers that confront CAM stakeholders when engaging with research. These findings highlight the need for a concerted and targeted approach to tackle these challenges.


Asunto(s)
Terapias Complementarias/psicología , Participación de los Interesados , Actitud , Australia , Investigación Biomédica/organización & administración , Investigación Biomédica/estadística & datos numéricos , Causalidad , Terapias Complementarias/organización & administración , Terapias Complementarias/estadística & datos numéricos , Humanos , Nueva Zelanda
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